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Posted
Posted

Oh I'd be angry too! But I do think Dr. Ponseti needs to know this before he

refers other people to a " certified " doctor who is no longer practicing a

certified method!

s.

Distressing news from Portland Shriners

I'm about as freaked out as I can get right now. I don't know if y'all

remember me being concerned about the application of Ponseti Method in

Portland last time I talked to our orthotist. Well, today I took Darbi

there to get measured for new shoes and talked to him again. It seems that

Dr. Sussman is not applying the method properly in more ways than bracing

times now. Apparently because parents aren't able to comply with the

DBB/FAB (babies are distressed!) he's now using AFO's and doing the

tenotomy standardly on all babies. While I don't think the tenotomy thing

is as horrible as it sounds, I KNOW my daughter did not need one and if

she'd been given one standardly she would have had an unnecessary

surgery. I'm just NOT happy about this. Dr. Sussman is listed on Dr.

Ponseti's website as certified. Dr. Ponseti referred me to him when Darbi

was born. I feel he should know about this... I am very angry that I am

the ONLY parent in Portland who knows the first thing about the Ponseti

Method (that I know of) and all these babies are being treated with AFO's

now instead of the FAB. Apparently not all, he told me (the orthotist)

that he fitted a baby just yesterday with the FAB... so it's not a lost

cause but unless something changes... the Ponseti Method will not be

available at Portland Shriners in the future.

This is actually my fault. Well, in a way it's not because I could never

get the orthotist to give me his email addy till today but I didn't push it

either. I should have sent him the information about properly applying the

FAB long ago. I should have sent the information about the brace

long ago. I should have PUSHED Dr. Sussman to review the information and

to contact Dr. Ponseti about the problems he was having with parents not

complying. The Orthotist told me today that the AFO maintains the

correction better. What a crock of @#%$!!!! I started to tell him about

how the FAB allows the calf muscle to develop and he says *they have plenty

of time to develop that muscle later* ohhhh!! I'm just so angry I could

spit!!!

So what do I do now? Well, my first thought is that I'm going to bombard

him with information starting with the tips post and I asked him to present

that information to new parents. I informed him that the orthotists don't

know these things, we talked about getting the heel down. He actually is

quite open to getting my emails, and I finally got him to give me his email

addy (something he said one time about them not being allowed to give email

addy's out - no communication between patients or something - BS!)

I need help though. I have lost most of my emails up till about 2 months

ago due to hard drive failure and having to give back the other laptop to

dh's former company. I have NOTHING saved anymore - none of the stuff from

with studies. None of the Ponseti emails people have sent to the

list, nothing. And I NEED it all. If anyone can help me please send me

anything that can be of use. I need information about AFO's, information

about DBB/FAB application/ brace, information about studies and

information about uncorrected feet. I need it all. If you have it saved

because you thought it was interesting PLEASE just fwd it to me. ,

I'll need your help the most with the studies. I would love for you to

send me your paper. If anyone has transcripts from symposia or other

conferences please send that to me too. I don't care what it is, if it

seems like it might help keep this method alive in Portland I want it.

TIA to all who can help. I can't tell you how much this makes me

crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti... but I

won't as of yet. I think I will try to make a difference in another

way. But if I have to I will. Seattle and Dr. Mosca are not that far

away... and if he has to refer people to Seattle rather than Portland than

so be it. I guess it's time for me to make a difference here, in the way

of a physical support group or something... I don't know what I'll have to

do but I know I must do something. AFO's... Jeez!!!

Kori

Mama of

Kenton 6/98

Merek 3/00

Darbi 3/03 - Rt. CF - DBB 12hr/day

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

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Posted
Posted

Kori,

I am only a few weeks in the group the only thing I can offer you is

my prayers. Just from reading your posts I know you will have the

strength to fight. Bless you!

KK

> I'm about as freaked out as I can get right now. I don't know if

y'all

> remember me being concerned about the application of Ponseti Method

in

> Portland last time I talked to our orthotist. Well, today I took

Darbi

> there to get measured for new shoes and talked to him again. It

seems that

> Dr. Sussman is not applying the method properly in more ways than

bracing

> times now. Apparently because parents aren't able to comply with

the

> DBB/FAB (babies are distressed!) he's now using AFO's and doing the

> tenotomy standardly on all babies. While I don't think the

tenotomy thing

> is as horrible as it sounds, I KNOW my daughter did not need one

and if

> she'd been given one standardly she would have had an unnecessary

> surgery. I'm just NOT happy about this. Dr. Sussman is listed on

Dr.

> Ponseti's website as certified. Dr. Ponseti referred me to him

when Darbi

> was born. I feel he should know about this... I am very angry that

I am

> the ONLY parent in Portland who knows the first thing about the

Ponseti

> Method (that I know of) and all these babies are being treated with

AFO's

> now instead of the FAB. Apparently not all, he told me (the

orthotist)

> that he fitted a baby just yesterday with the FAB... so it's not a

lost

> cause but unless something changes... the Ponseti Method will not

be

> available at Portland Shriners in the future.

>

> This is actually my fault. Well, in a way it's not because I could

never

> get the orthotist to give me his email addy till today but I didn't

push it

> either. I should have sent him the information about properly

applying the

> FAB long ago. I should have sent the information about the

brace

> long ago. I should have PUSHED Dr. Sussman to review the

information and

> to contact Dr. Ponseti about the problems he was having with

parents not

> complying. The Orthotist told me today that the AFO maintains the

> correction better. What a crock of @#%$!!!! I started to tell him

about

> how the FAB allows the calf muscle to develop and he says *they

have plenty

> of time to develop that muscle later* ohhhh!! I'm just so angry I

could

> spit!!!

>

> So what do I do now? Well, my first thought is that I'm going to

bombard

> him with information starting with the tips post and I asked him to

present

> that information to new parents. I informed him that the

orthotists don't

> know these things, we talked about getting the heel down. He

actually is

> quite open to getting my emails, and I finally got him to give me

his email

> addy (something he said one time about them not being allowed to

give email

> addy's out - no communication between patients or something - BS!)

>

> I need help though. I have lost most of my emails up till about 2

months

> ago due to hard drive failure and having to give back the other

laptop to

> dh's former company. I have NOTHING saved anymore - none of the

stuff from

> with studies. None of the Ponseti emails people have sent

to the

> list, nothing. And I NEED it all. If anyone can help me please

send me

> anything that can be of use. I need information about AFO's,

information

> about DBB/FAB application/ brace, information about studies

and

> information about uncorrected feet. I need it all. If you have it

saved

> because you thought it was interesting PLEASE just fwd it to me.

,

> I'll need your help the most with the studies. I would love for

you to

> send me your paper. If anyone has transcripts from symposia or

other

> conferences please send that to me too. I don't care what it is,

if it

> seems like it might help keep this method alive in Portland I want

it.

>

> TIA to all who can help. I can't tell you how much this makes me

> crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti...

but I

> won't as of yet. I think I will try to make a difference in

another

> way. But if I have to I will. Seattle and Dr. Mosca are not that

far

> away... and if he has to refer people to Seattle rather than

Portland than

> so be it. I guess it's time for me to make a difference here, in

the way

> of a physical support group or something... I don't know what I'll

have to

> do but I know I must do something. AFO's... Jeez!!!

>

> Kori

> Mama of

> Kenton 6/98

> Merek 3/00

> Darbi 3/03 - Rt. CF - DBB 12hr/day

> (¨`·.·´¨)

> `·.¸(¨`·.·´¨)

> `·.¸.·´

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Posted
Posted

I agree. No telling how much unnecessary damage, relapses, surgery, etc. he

could cause to other babies in the meantime if he's stopped practicing the

method correctly. Hours spent in the shoes is one thing since you can

change that yourself to the correct amount of time, but AFO's for the

Ponseti method? Yikes! And putting a child through the tenotomy if they

don't need it? We were lucky because didn't need the tenotomy

and his feet still dorsiflex very nicely. I would have been extremely upset

if his doc had put him through that procedure anyway even when he didn't

need it.

and

BCF 03/25/2004

DBB 23/7

On 9/10/2004 2:27:17 PM, nosurgery4clubfoot wrote:

> Oh

> I'd be angry too! But I do think Dr. Ponseti needs to know this before he

refers other people to a " certified " doctor who is no longer practicing a

certified method!

> s.

>

> Distressing news from Portland Shriners

>

>

> I'm

> about as freaked out as I can get right now. I don't know if y'all

> remember me being concerned about the application of Ponseti Method in

> Portland last time I talked to our orthotist. Well, today I took Darbi

> there to get measured for new shoes and talked to him again. It seems

> that

> Dr. Sussman is not applying the method properly in more ways than

> bracing

> times now. Apparently because parents

> aren't able to comply with the

> DBB/FAB (babies are distressed!) he's now

> using

> AFO's and doing the

> tenotomy standardly on all babies. While I don't

> think the tenotomy thing

> is as horrible as it sounds, I KNOW my daughter did not need one and if

> she'd been given one standardly she would have had an unnecessary

> surgery. I'm

> just NOT happy abo

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Posted
Posted

I agree. No telling how much unnecessary damage, relapses, surgery, etc. he

could cause to other babies in the meantime if he's stopped practicing the

method correctly. Hours spent in the shoes is one thing since you can

change that yourself to the correct amount of time, but AFO's for the

Ponseti method? Yikes! And putting a child through the tenotomy if they

don't need it? We were lucky because didn't need the tenotomy

and his feet still dorsiflex very nicely. I would have been extremely upset

if his doc had put him through that procedure anyway even when he didn't

need it.

and

BCF 03/25/2004

DBB 23/7

On 9/10/2004 2:27:17 PM, nosurgery4clubfoot wrote:

> Oh

> I'd be angry too! But I do think Dr. Ponseti needs to know this before he

refers other people to a " certified " doctor who is no longer practicing a

certified method!

> s.

>

> Distressing news from Portland Shriners

>

>

> I'm

> about as freaked out as I can get right now. I don't know if y'all

> remember me being concerned about the application of Ponseti Method in

> Portland last time I talked to our orthotist. Well, today I took Darbi

> there to get measured for new shoes and talked to him again. It seems

> that

> Dr. Sussman is not applying the method properly in more ways than

> bracing

> times now. Apparently because parents

> aren't able to comply with the

> DBB/FAB (babies are distressed!) he's now

> using

> AFO's and doing the

> tenotomy standardly on all babies. While I don't

> think the tenotomy thing

> is as horrible as it sounds, I KNOW my daughter did not need one and if

> she'd been given one standardly she would have had an unnecessary

> surgery. I'm

> just NOT happy abo

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Posted
Posted

I agree. No telling how much unnecessary damage, relapses, surgery, etc. he

could cause to other babies in the meantime if he's stopped practicing the

method correctly. Hours spent in the shoes is one thing since you can

change that yourself to the correct amount of time, but AFO's for the

Ponseti method? Yikes! And putting a child through the tenotomy if they

don't need it? We were lucky because didn't need the tenotomy

and his feet still dorsiflex very nicely. I would have been extremely upset

if his doc had put him through that procedure anyway even when he didn't

need it.

and

BCF 03/25/2004

DBB 23/7

On 9/10/2004 2:27:17 PM, nosurgery4clubfoot wrote:

> Oh

> I'd be angry too! But I do think Dr. Ponseti needs to know this before he

refers other people to a " certified " doctor who is no longer practicing a

certified method!

> s.

>

> Distressing news from Portland Shriners

>

>

> I'm

> about as freaked out as I can get right now. I don't know if y'all

> remember me being concerned about the application of Ponseti Method in

> Portland last time I talked to our orthotist. Well, today I took Darbi

> there to get measured for new shoes and talked to him again. It seems

> that

> Dr. Sussman is not applying the method properly in more ways than

> bracing

> times now. Apparently because parents

> aren't able to comply with the

> DBB/FAB (babies are distressed!) he's now

> using

> AFO's and doing the

> tenotomy standardly on all babies. While I don't

> think the tenotomy thing

> is as horrible as it sounds, I KNOW my daughter did not need one and if

> she'd been given one standardly she would have had an unnecessary

> surgery. I'm

> just NOT happy abo

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Posted
Posted

Kori,

First of all there is NO WAY this is your fault! I understand what

you are saying, but you cannot feel responsible for it. The info you

are asking for..... sign into yahoo groups, choose nosurgery group

and there is an archive of all the messages. You can search using

keywords. Good luck in your quest....I feel your frustration.

Pam and (8-12-01)

> I'm about as freaked out as I can get right now. I don't know if

y'all

> remember me being concerned about the application of Ponseti Method

in

> Portland last time I talked to our orthotist. Well, today I took

Darbi

> there to get measured for new shoes and talked to him again. It

seems that

> Dr. Sussman is not applying the method properly in more ways than

bracing

> times now. Apparently because parents aren't able to comply with

the

> DBB/FAB (babies are distressed!) he's now using AFO's and doing the

> tenotomy standardly on all babies. While I don't think the

tenotomy thing

> is as horrible as it sounds, I KNOW my daughter did not need one

and if

> she'd been given one standardly she would have had an unnecessary

> surgery. I'm just NOT happy about this. Dr. Sussman is listed on

Dr.

> Ponseti's website as certified. Dr. Ponseti referred me to him

when Darbi

> was born. I feel he should know about this... I am very angry that

I am

> the ONLY parent in Portland who knows the first thing about the

Ponseti

> Method (that I know of) and all these babies are being treated with

AFO's

> now instead of the FAB. Apparently not all, he told me (the

orthotist)

> that he fitted a baby just yesterday with the FAB... so it's not a

lost

> cause but unless something changes... the Ponseti Method will not

be

> available at Portland Shriners in the future.

>

> This is actually my fault. Well, in a way it's not because I could

never

> get the orthotist to give me his email addy till today but I didn't

push it

> either. I should have sent him the information about properly

applying the

> FAB long ago. I should have sent the information about the

brace

> long ago. I should have PUSHED Dr. Sussman to review the

information and

> to contact Dr. Ponseti about the problems he was having with

parents not

> complying. The Orthotist told me today that the AFO maintains the

> correction better. What a crock of @#%$!!!! I started to tell him

about

> how the FAB allows the calf muscle to develop and he says *they

have plenty

> of time to develop that muscle later* ohhhh!! I'm just so angry I

could

> spit!!!

>

> So what do I do now? Well, my first thought is that I'm going to

bombard

> him with information starting with the tips post and I asked him to

present

> that information to new parents. I informed him that the

orthotists don't

> know these things, we talked about getting the heel down. He

actually is

> quite open to getting my emails, and I finally got him to give me

his email

> addy (something he said one time about them not being allowed to

give email

> addy's out - no communication between patients or something - BS!)

>

> I need help though. I have lost most of my emails up till about 2

months

> ago due to hard drive failure and having to give back the other

laptop to

> dh's former company. I have NOTHING saved anymore - none of the

stuff from

> with studies. None of the Ponseti emails people have sent

to the

> list, nothing. And I NEED it all. If anyone can help me please

send me

> anything that can be of use. I need information about AFO's,

information

> about DBB/FAB application/ brace, information about studies

and

> information about uncorrected feet. I need it all. If you have it

saved

> because you thought it was interesting PLEASE just fwd it to me.

,

> I'll need your help the most with the studies. I would love for

you to

> send me your paper. If anyone has transcripts from symposia or

other

> conferences please send that to me too. I don't care what it is,

if it

> seems like it might help keep this method alive in Portland I want

it.

>

> TIA to all who can help. I can't tell you how much this makes me

> crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti...

but I

> won't as of yet. I think I will try to make a difference in

another

> way. But if I have to I will. Seattle and Dr. Mosca are not that

far

> away... and if he has to refer people to Seattle rather than

Portland than

> so be it. I guess it's time for me to make a difference here, in

the way

> of a physical support group or something... I don't know what I'll

have to

> do but I know I must do something. AFO's... Jeez!!!

>

> Kori

> Mama of

> Kenton 6/98

> Merek 3/00

> Darbi 3/03 - Rt. CF - DBB 12hr/day

> (¨`·.·´¨)

> `·.¸(¨`·.·´¨)

> `·.¸.·´

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Posted
Posted

Kori,

First of all there is NO WAY this is your fault! I understand what

you are saying, but you cannot feel responsible for it. The info you

are asking for..... sign into yahoo groups, choose nosurgery group

and there is an archive of all the messages. You can search using

keywords. Good luck in your quest....I feel your frustration.

Pam and (8-12-01)

> I'm about as freaked out as I can get right now. I don't know if

y'all

> remember me being concerned about the application of Ponseti Method

in

> Portland last time I talked to our orthotist. Well, today I took

Darbi

> there to get measured for new shoes and talked to him again. It

seems that

> Dr. Sussman is not applying the method properly in more ways than

bracing

> times now. Apparently because parents aren't able to comply with

the

> DBB/FAB (babies are distressed!) he's now using AFO's and doing the

> tenotomy standardly on all babies. While I don't think the

tenotomy thing

> is as horrible as it sounds, I KNOW my daughter did not need one

and if

> she'd been given one standardly she would have had an unnecessary

> surgery. I'm just NOT happy about this. Dr. Sussman is listed on

Dr.

> Ponseti's website as certified. Dr. Ponseti referred me to him

when Darbi

> was born. I feel he should know about this... I am very angry that

I am

> the ONLY parent in Portland who knows the first thing about the

Ponseti

> Method (that I know of) and all these babies are being treated with

AFO's

> now instead of the FAB. Apparently not all, he told me (the

orthotist)

> that he fitted a baby just yesterday with the FAB... so it's not a

lost

> cause but unless something changes... the Ponseti Method will not

be

> available at Portland Shriners in the future.

>

> This is actually my fault. Well, in a way it's not because I could

never

> get the orthotist to give me his email addy till today but I didn't

push it

> either. I should have sent him the information about properly

applying the

> FAB long ago. I should have sent the information about the

brace

> long ago. I should have PUSHED Dr. Sussman to review the

information and

> to contact Dr. Ponseti about the problems he was having with

parents not

> complying. The Orthotist told me today that the AFO maintains the

> correction better. What a crock of @#%$!!!! I started to tell him

about

> how the FAB allows the calf muscle to develop and he says *they

have plenty

> of time to develop that muscle later* ohhhh!! I'm just so angry I

could

> spit!!!

>

> So what do I do now? Well, my first thought is that I'm going to

bombard

> him with information starting with the tips post and I asked him to

present

> that information to new parents. I informed him that the

orthotists don't

> know these things, we talked about getting the heel down. He

actually is

> quite open to getting my emails, and I finally got him to give me

his email

> addy (something he said one time about them not being allowed to

give email

> addy's out - no communication between patients or something - BS!)

>

> I need help though. I have lost most of my emails up till about 2

months

> ago due to hard drive failure and having to give back the other

laptop to

> dh's former company. I have NOTHING saved anymore - none of the

stuff from

> with studies. None of the Ponseti emails people have sent

to the

> list, nothing. And I NEED it all. If anyone can help me please

send me

> anything that can be of use. I need information about AFO's,

information

> about DBB/FAB application/ brace, information about studies

and

> information about uncorrected feet. I need it all. If you have it

saved

> because you thought it was interesting PLEASE just fwd it to me.

,

> I'll need your help the most with the studies. I would love for

you to

> send me your paper. If anyone has transcripts from symposia or

other

> conferences please send that to me too. I don't care what it is,

if it

> seems like it might help keep this method alive in Portland I want

it.

>

> TIA to all who can help. I can't tell you how much this makes me

> crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti...

but I

> won't as of yet. I think I will try to make a difference in

another

> way. But if I have to I will. Seattle and Dr. Mosca are not that

far

> away... and if he has to refer people to Seattle rather than

Portland than

> so be it. I guess it's time for me to make a difference here, in

the way

> of a physical support group or something... I don't know what I'll

have to

> do but I know I must do something. AFO's... Jeez!!!

>

> Kori

> Mama of

> Kenton 6/98

> Merek 3/00

> Darbi 3/03 - Rt. CF - DBB 12hr/day

> (¨`·.·´¨)

> `·.¸(¨`·.·´¨)

> `·.¸.·´

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Posted
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Kori,

I am SO SORRY! Although I have always privately had my doubts about the

shriners, just because you seem to be the best informed person there, I am

SHOCKED! If I were you, I would email Dr. Ponseti ASAP and ask him if he can

intercede. Perhaps he dosn't know. It would be nice to bombard Dr. Susseman

with info, but maybe a call from the top with straighten him out.

Darbi is going to be fine and you have been so dilligent in her protocol that I

am sure she is over the hump, so to speak. You may need to be like me and see

Dr. Susseman for routine checks and Dr. Mosca once a year, or just bite the

bullet and switch to Mosca. At any rate, I applaud your efforts and wish you

the best. Give em hell, Kori!!!!!

Robin & Rose

3/12/03 Right club foot

frogabog frogabog@...> wrote:

I'm about as freaked out as I can get right now. I don't know if y'all

remember me being concerned about the application of Ponseti Method in

Portland last time I talked to our orthotist. Well, today I took Darbi

there to get measured for new shoes and talked to him again. It seems that

Dr. Sussman is not applying the method properly in more ways than bracing

times now. Apparently because parents aren't able to comply with the

DBB/FAB (babies are distressed!) he's now using AFO's and doing the

tenotomy standardly on all babies. While I don't think the tenotomy thing

is as horrible as it sounds, I KNOW my daughter did not need one and if

she'd been given one standardly she would have had an unnecessary

surgery. I'm just NOT happy about this. Dr. Sussman is listed on Dr.

Ponseti's website as certified. Dr. Ponseti referred me to him when Darbi

was born. I feel he should know about this... I am very angry that I am

the ONLY parent in Portland who knows the first thing about the Ponseti

Method (that I know of) and all these babies are being treated with AFO's

now instead of the FAB. Apparently not all, he told me (the orthotist)

that he fitted a baby just yesterday with the FAB... so it's not a lost

cause but unless something changes... the Ponseti Method will not be

available at Portland Shriners in the future.

This is actually my fault. Well, in a way it's not because I could never

get the orthotist to give me his email addy till today but I didn't push it

either. I should have sent him the information about properly applying the

FAB long ago. I should have sent the information about the brace

long ago. I should have PUSHED Dr. Sussman to review the information and

to contact Dr. Ponseti about the problems he was having with parents not

complying. The Orthotist told me today that the AFO maintains the

correction better. What a crock of @#%$!!!! I started to tell him about

how the FAB allows the calf muscle to develop and he says *they have plenty

of time to develop that muscle later* ohhhh!! I'm just so angry I could

spit!!!

So what do I do now? Well, my first thought is that I'm going to bombard

him with information starting with the tips post and I asked him to present

that information to new parents. I informed him that the orthotists don't

know these things, we talked about getting the heel down. He actually is

quite open to getting my emails, and I finally got him to give me his email

addy (something he said one time about them not being allowed to give email

addy's out - no communication between patients or something - BS!)

I need help though. I have lost most of my emails up till about 2 months

ago due to hard drive failure and having to give back the other laptop to

dh's former company. I have NOTHING saved anymore - none of the stuff from

with studies. None of the Ponseti emails people have sent to the

list, nothing. And I NEED it all. If anyone can help me please send me

anything that can be of use. I need information about AFO's, information

about DBB/FAB application/ brace, information about studies and

information about uncorrected feet. I need it all. If you have it saved

because you thought it was interesting PLEASE just fwd it to me. ,

I'll need your help the most with the studies. I would love for you to

send me your paper. If anyone has transcripts from symposia or other

conferences please send that to me too. I don't care what it is, if it

seems like it might help keep this method alive in Portland I want it.

TIA to all who can help. I can't tell you how much this makes me

crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti... but I

won't as of yet. I think I will try to make a difference in another

way. But if I have to I will. Seattle and Dr. Mosca are not that far

away... and if he has to refer people to Seattle rather than Portland than

so be it. I guess it's time for me to make a difference here, in the way

of a physical support group or something... I don't know what I'll have to

do but I know I must do something. AFO's... Jeez!!!

Kori

Mama of

Kenton 6/98

Merek 3/00

Darbi 3/03 - Rt. CF - DBB 12hr/day

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

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Posted
Posted

Kori,

All of the information you are looking for is on the internet. Most

of it can be accessed here through prior messages or else from

's Ponseti method links site at

http://pages.ivillage.com/ponseti_links/

The global HELP pamphlet discusses why AFO's are not as good in

preventing relapses. That has also been discussed here a bit in the

recent past.

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/22284

> I'm about as freaked out as I can get right now. I don't know if

y'all

> remember me being concerned about the application of Ponseti Method

in

> Portland last time I talked to our orthotist. Well, today I took

Darbi

> there to get measured for new shoes and talked to him again. It

seems that

> Dr. Sussman is not applying the method properly in more ways than

bracing

> times now. Apparently because parents aren't able to comply with

the

> DBB/FAB (babies are distressed!) he's now using AFO's and doing the

> tenotomy standardly on all babies. While I don't think the

tenotomy thing

> is as horrible as it sounds, I KNOW my daughter did not need one

and if

> she'd been given one standardly she would have had an unnecessary

> surgery. I'm just NOT happy about this. Dr. Sussman is listed on

Dr.

> Ponseti's website as certified. Dr. Ponseti referred me to him

when Darbi

> was born. I feel he should know about this... I am very angry that

I am

> the ONLY parent in Portland who knows the first thing about the

Ponseti

> Method (that I know of) and all these babies are being treated with

AFO's

> now instead of the FAB. Apparently not all, he told me (the

orthotist)

> that he fitted a baby just yesterday with the FAB... so it's not a

lost

> cause but unless something changes... the Ponseti Method will not

be

> available at Portland Shriners in the future.

>

> This is actually my fault. Well, in a way it's not because I could

never

> get the orthotist to give me his email addy till today but I didn't

push it

> either. I should have sent him the information about properly

applying the

> FAB long ago. I should have sent the information about the

brace

> long ago. I should have PUSHED Dr. Sussman to review the

information and

> to contact Dr. Ponseti about the problems he was having with

parents not

> complying. The Orthotist told me today that the AFO maintains the

> correction better. What a crock of @#%$!!!! I started to tell him

about

> how the FAB allows the calf muscle to develop and he says *they

have plenty

> of time to develop that muscle later* ohhhh!! I'm just so angry I

could

> spit!!!

>

> So what do I do now? Well, my first thought is that I'm going to

bombard

> him with information starting with the tips post and I asked him to

present

> that information to new parents. I informed him that the

orthotists don't

> know these things, we talked about getting the heel down. He

actually is

> quite open to getting my emails, and I finally got him to give me

his email

> addy (something he said one time about them not being allowed to

give email

> addy's out - no communication between patients or something - BS!)

>

> I need help though. I have lost most of my emails up till about 2

months

> ago due to hard drive failure and having to give back the other

laptop to

> dh's former company. I have NOTHING saved anymore - none of the

stuff from

> with studies. None of the Ponseti emails people have sent

to the

> list, nothing. And I NEED it all. If anyone can help me please

send me

> anything that can be of use. I need information about AFO's,

information

> about DBB/FAB application/ brace, information about studies

and

> information about uncorrected feet. I need it all. If you have it

saved

> because you thought it was interesting PLEASE just fwd it to me.

,

> I'll need your help the most with the studies. I would love for

you to

> send me your paper. If anyone has transcripts from symposia or

other

> conferences please send that to me too. I don't care what it is,

if it

> seems like it might help keep this method alive in Portland I want

it.

>

> TIA to all who can help. I can't tell you how much this makes me

> crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti...

but I

> won't as of yet. I think I will try to make a difference in

another

> way. But if I have to I will. Seattle and Dr. Mosca are not that

far

> away... and if he has to refer people to Seattle rather than

Portland than

> so be it. I guess it's time for me to make a difference here, in

the way

> of a physical support group or something... I don't know what I'll

have to

> do but I know I must do something. AFO's... Jeez!!!

>

> Kori

> Mama of

> Kenton 6/98

> Merek 3/00

> Darbi 3/03 - Rt. CF - DBB 12hr/day

> (¨`·.·´¨)

> `·.¸(¨`·.·´¨)

> `·.¸.·´

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Share on other sites
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Guest guest

Posted
Posted

Kori,

All of the information you are looking for is on the internet. Most

of it can be accessed here through prior messages or else from

's Ponseti method links site at

http://pages.ivillage.com/ponseti_links/

The global HELP pamphlet discusses why AFO's are not as good in

preventing relapses. That has also been discussed here a bit in the

recent past.

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/22284

> I'm about as freaked out as I can get right now. I don't know if

y'all

> remember me being concerned about the application of Ponseti Method

in

> Portland last time I talked to our orthotist. Well, today I took

Darbi

> there to get measured for new shoes and talked to him again. It

seems that

> Dr. Sussman is not applying the method properly in more ways than

bracing

> times now. Apparently because parents aren't able to comply with

the

> DBB/FAB (babies are distressed!) he's now using AFO's and doing the

> tenotomy standardly on all babies. While I don't think the

tenotomy thing

> is as horrible as it sounds, I KNOW my daughter did not need one

and if

> she'd been given one standardly she would have had an unnecessary

> surgery. I'm just NOT happy about this. Dr. Sussman is listed on

Dr.

> Ponseti's website as certified. Dr. Ponseti referred me to him

when Darbi

> was born. I feel he should know about this... I am very angry that

I am

> the ONLY parent in Portland who knows the first thing about the

Ponseti

> Method (that I know of) and all these babies are being treated with

AFO's

> now instead of the FAB. Apparently not all, he told me (the

orthotist)

> that he fitted a baby just yesterday with the FAB... so it's not a

lost

> cause but unless something changes... the Ponseti Method will not

be

> available at Portland Shriners in the future.

>

> This is actually my fault. Well, in a way it's not because I could

never

> get the orthotist to give me his email addy till today but I didn't

push it

> either. I should have sent him the information about properly

applying the

> FAB long ago. I should have sent the information about the

brace

> long ago. I should have PUSHED Dr. Sussman to review the

information and

> to contact Dr. Ponseti about the problems he was having with

parents not

> complying. The Orthotist told me today that the AFO maintains the

> correction better. What a crock of @#%$!!!! I started to tell him

about

> how the FAB allows the calf muscle to develop and he says *they

have plenty

> of time to develop that muscle later* ohhhh!! I'm just so angry I

could

> spit!!!

>

> So what do I do now? Well, my first thought is that I'm going to

bombard

> him with information starting with the tips post and I asked him to

present

> that information to new parents. I informed him that the

orthotists don't

> know these things, we talked about getting the heel down. He

actually is

> quite open to getting my emails, and I finally got him to give me

his email

> addy (something he said one time about them not being allowed to

give email

> addy's out - no communication between patients or something - BS!)

>

> I need help though. I have lost most of my emails up till about 2

months

> ago due to hard drive failure and having to give back the other

laptop to

> dh's former company. I have NOTHING saved anymore - none of the

stuff from

> with studies. None of the Ponseti emails people have sent

to the

> list, nothing. And I NEED it all. If anyone can help me please

send me

> anything that can be of use. I need information about AFO's,

information

> about DBB/FAB application/ brace, information about studies

and

> information about uncorrected feet. I need it all. If you have it

saved

> because you thought it was interesting PLEASE just fwd it to me.

,

> I'll need your help the most with the studies. I would love for

you to

> send me your paper. If anyone has transcripts from symposia or

other

> conferences please send that to me too. I don't care what it is,

if it

> seems like it might help keep this method alive in Portland I want

it.

>

> TIA to all who can help. I can't tell you how much this makes me

> crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti...

but I

> won't as of yet. I think I will try to make a difference in

another

> way. But if I have to I will. Seattle and Dr. Mosca are not that

far

> away... and if he has to refer people to Seattle rather than

Portland than

> so be it. I guess it's time for me to make a difference here, in

the way

> of a physical support group or something... I don't know what I'll

have to

> do but I know I must do something. AFO's... Jeez!!!

>

> Kori

> Mama of

> Kenton 6/98

> Merek 3/00

> Darbi 3/03 - Rt. CF - DBB 12hr/day

> (¨`·.·´¨)

> `·.¸(¨`·.·´¨)

> `·.¸.·´

Link to comment
Share on other sites
Guest guest

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Posted
Posted

Kori,

All of the information you are looking for is on the internet. Most

of it can be accessed here through prior messages or else from

's Ponseti method links site at

http://pages.ivillage.com/ponseti_links/

The global HELP pamphlet discusses why AFO's are not as good in

preventing relapses. That has also been discussed here a bit in the

recent past.

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/22284

> I'm about as freaked out as I can get right now. I don't know if

y'all

> remember me being concerned about the application of Ponseti Method

in

> Portland last time I talked to our orthotist. Well, today I took

Darbi

> there to get measured for new shoes and talked to him again. It

seems that

> Dr. Sussman is not applying the method properly in more ways than

bracing

> times now. Apparently because parents aren't able to comply with

the

> DBB/FAB (babies are distressed!) he's now using AFO's and doing the

> tenotomy standardly on all babies. While I don't think the

tenotomy thing

> is as horrible as it sounds, I KNOW my daughter did not need one

and if

> she'd been given one standardly she would have had an unnecessary

> surgery. I'm just NOT happy about this. Dr. Sussman is listed on

Dr.

> Ponseti's website as certified. Dr. Ponseti referred me to him

when Darbi

> was born. I feel he should know about this... I am very angry that

I am

> the ONLY parent in Portland who knows the first thing about the

Ponseti

> Method (that I know of) and all these babies are being treated with

AFO's

> now instead of the FAB. Apparently not all, he told me (the

orthotist)

> that he fitted a baby just yesterday with the FAB... so it's not a

lost

> cause but unless something changes... the Ponseti Method will not

be

> available at Portland Shriners in the future.

>

> This is actually my fault. Well, in a way it's not because I could

never

> get the orthotist to give me his email addy till today but I didn't

push it

> either. I should have sent him the information about properly

applying the

> FAB long ago. I should have sent the information about the

brace

> long ago. I should have PUSHED Dr. Sussman to review the

information and

> to contact Dr. Ponseti about the problems he was having with

parents not

> complying. The Orthotist told me today that the AFO maintains the

> correction better. What a crock of @#%$!!!! I started to tell him

about

> how the FAB allows the calf muscle to develop and he says *they

have plenty

> of time to develop that muscle later* ohhhh!! I'm just so angry I

could

> spit!!!

>

> So what do I do now? Well, my first thought is that I'm going to

bombard

> him with information starting with the tips post and I asked him to

present

> that information to new parents. I informed him that the

orthotists don't

> know these things, we talked about getting the heel down. He

actually is

> quite open to getting my emails, and I finally got him to give me

his email

> addy (something he said one time about them not being allowed to

give email

> addy's out - no communication between patients or something - BS!)

>

> I need help though. I have lost most of my emails up till about 2

months

> ago due to hard drive failure and having to give back the other

laptop to

> dh's former company. I have NOTHING saved anymore - none of the

stuff from

> with studies. None of the Ponseti emails people have sent

to the

> list, nothing. And I NEED it all. If anyone can help me please

send me

> anything that can be of use. I need information about AFO's,

information

> about DBB/FAB application/ brace, information about studies

and

> information about uncorrected feet. I need it all. If you have it

saved

> because you thought it was interesting PLEASE just fwd it to me.

,

> I'll need your help the most with the studies. I would love for

you to

> send me your paper. If anyone has transcripts from symposia or

other

> conferences please send that to me too. I don't care what it is,

if it

> seems like it might help keep this method alive in Portland I want

it.

>

> TIA to all who can help. I can't tell you how much this makes me

> crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti...

but I

> won't as of yet. I think I will try to make a difference in

another

> way. But if I have to I will. Seattle and Dr. Mosca are not that

far

> away... and if he has to refer people to Seattle rather than

Portland than

> so be it. I guess it's time for me to make a difference here, in

the way

> of a physical support group or something... I don't know what I'll

have to

> do but I know I must do something. AFO's... Jeez!!!

>

> Kori

> Mama of

> Kenton 6/98

> Merek 3/00

> Darbi 3/03 - Rt. CF - DBB 12hr/day

> (¨`·.·´¨)

> `·.¸(¨`·.·´¨)

> `·.¸.·´

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Posted
Posted

Kori,

I agree with previous posts that suggested you let Dr. Ponseti know about

the deviations. As I mentioned before, he has a form letter of sorts that he

sends to doctors. He says something to the effect that " I have learned from

a parent that you are deviating from the method by using AFOs although they

are not effective at holding the correction " . Something like that. Whatever

the deviations are.

I " told " on our second doctor and Dr. Ponseti sent her a letter. That was

way more effective than me trying to tell her she was doing it wrong. I did

email her to let her know I was switching doctors, and she never responded

to find out why or anything. Switching to a different doctor is another

effective way of " sending a message " . I agree that when I have an issue with

someone, I would like to discuss it, but the doctor patient relationship is

just not on an equal footing, much like most parent child relationships. I

remember telling my sister not to do something I knew she shouldn't be doing

and she would ignore me. Then again, she'd ignore my parents, too, until

they smacked her!

Anyway, just my 2 cents. For your own peace of mind, you could try to talk

directly with the doctor and see how that goes, even mention that you will

be letting Dr. P. know about his deviations, but I would still plan to let

Dr. P. know. He thanked me very much for letting him know.

Good luck! Joanne W.

frogabog frogabog@...> wrote:

I'm about as freaked out as I can get right now. I don't know if y'all

remember me being concerned about the application of Ponseti Method in

Portland last time I talked to our orthotist. Well, today I took Darbi

there to get measured for new shoes and talked to him again. It seems that

Dr. Sussman is not applying the method properly in more ways than bracing

times now. Apparently because parents aren't able to comply with the

DBB/FAB (babies are distressed!) he's now using AFO's and doing the

tenotomy standardly on all babies. While I don't think the tenotomy thing

is as horrible as it sounds, I KNOW my daughter did not need one and if

she'd been given one standardly she would have had an unnecessary

surgery. I'm just NOT happy about this. Dr. Sussman is listed on Dr.

Ponseti's website as certified. Dr. Ponseti referred me to him when Darbi

was born. I feel he should know about this... I am very angry that I am

the ONLY parent in Portland who knows the first thing about the Ponseti

Method (that I know of) and all these babies are being treated with AFO's

now instead of the FAB. Apparently not all, he told me (the orthotist)

that he fitted a baby just yesterday with the FAB... so it's not a lost

cause but unless something changes... the Ponseti Method will not be

available at Portland Shriners in the future.

This is actually my fault. Well, in a way it's not because I could never

get the orthotist to give me his email addy till today but I didn't push it

either. I should have sent him the information about properly applying the

FAB long ago. I should have sent the information about the brace

long ago. I should have PUSHED Dr. Sussman to review the information and

to contact Dr. Ponseti about the problems he was having with parents not

complying. The Orthotist told me today that the AFO maintains the

correction better. What a crock of @#%$!!!! I started to tell him about

how the FAB allows the calf muscle to develop and he says *they have plenty

of time to develop that muscle later* ohhhh!! I'm just so angry I could

spit!!!

So what do I do now? Well, my first thought is that I'm going to bombard

him with information starting with the tips post and I asked him to present

that information to new parents. I informed him that the orthotists don't

know these things, we talked about getting the heel down. He actually is

quite open to getting my emails, and I finally got him to give me his email

addy (something he said one time about them not being allowed to give email

addy's out - no communication between patients or something - BS!)

I need help though. I have lost most of my emails up till about 2 months

ago due to hard drive failure and having to give back the other laptop to

dh's former company. I have NOTHING saved anymore - none of the stuff from

with studies. None of the Ponseti emails people have sent to the

list, nothing. And I NEED it all. If anyone can help me please send me

anything that can be of use. I need information about AFO's, information

about DBB/FAB application/ brace, information about studies and

information about uncorrected feet. I need it all. If you have it saved

because you thought it was interesting PLEASE just fwd it to me. ,

I'll need your help the most with the studies. I would love for you to

send me your paper. If anyone has transcripts from symposia or other

conferences please send that to me too. I don't care what it is, if it

seems like it might help keep this method alive in Portland I want it.

TIA to all who can help. I can't tell you how much this makes me

crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti... but I

won't as of yet. I think I will try to make a difference in another

way. But if I have to I will. Seattle and Dr. Mosca are not that far

away... and if he has to refer people to Seattle rather than Portland than

so be it. I guess it's time for me to make a difference here, in the way

of a physical support group or something... I don't know what I'll have to

do but I know I must do something. AFO's... Jeez!!!

Kori

Mama of

Kenton 6/98

Merek 3/00

Darbi 3/03 - Rt. CF - DBB 12hr/day

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

_________________________________________________________________

Is your PC infected? Get a FREE online computer virus scan from McAfee®

Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

Link to comment
Share on other sites
Guest guest

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Posted
Posted

Kori,

I agree with previous posts that suggested you let Dr. Ponseti know about

the deviations. As I mentioned before, he has a form letter of sorts that he

sends to doctors. He says something to the effect that " I have learned from

a parent that you are deviating from the method by using AFOs although they

are not effective at holding the correction " . Something like that. Whatever

the deviations are.

I " told " on our second doctor and Dr. Ponseti sent her a letter. That was

way more effective than me trying to tell her she was doing it wrong. I did

email her to let her know I was switching doctors, and she never responded

to find out why or anything. Switching to a different doctor is another

effective way of " sending a message " . I agree that when I have an issue with

someone, I would like to discuss it, but the doctor patient relationship is

just not on an equal footing, much like most parent child relationships. I

remember telling my sister not to do something I knew she shouldn't be doing

and she would ignore me. Then again, she'd ignore my parents, too, until

they smacked her!

Anyway, just my 2 cents. For your own peace of mind, you could try to talk

directly with the doctor and see how that goes, even mention that you will

be letting Dr. P. know about his deviations, but I would still plan to let

Dr. P. know. He thanked me very much for letting him know.

Good luck! Joanne W.

frogabog frogabog@...> wrote:

I'm about as freaked out as I can get right now. I don't know if y'all

remember me being concerned about the application of Ponseti Method in

Portland last time I talked to our orthotist. Well, today I took Darbi

there to get measured for new shoes and talked to him again. It seems that

Dr. Sussman is not applying the method properly in more ways than bracing

times now. Apparently because parents aren't able to comply with the

DBB/FAB (babies are distressed!) he's now using AFO's and doing the

tenotomy standardly on all babies. While I don't think the tenotomy thing

is as horrible as it sounds, I KNOW my daughter did not need one and if

she'd been given one standardly she would have had an unnecessary

surgery. I'm just NOT happy about this. Dr. Sussman is listed on Dr.

Ponseti's website as certified. Dr. Ponseti referred me to him when Darbi

was born. I feel he should know about this... I am very angry that I am

the ONLY parent in Portland who knows the first thing about the Ponseti

Method (that I know of) and all these babies are being treated with AFO's

now instead of the FAB. Apparently not all, he told me (the orthotist)

that he fitted a baby just yesterday with the FAB... so it's not a lost

cause but unless something changes... the Ponseti Method will not be

available at Portland Shriners in the future.

This is actually my fault. Well, in a way it's not because I could never

get the orthotist to give me his email addy till today but I didn't push it

either. I should have sent him the information about properly applying the

FAB long ago. I should have sent the information about the brace

long ago. I should have PUSHED Dr. Sussman to review the information and

to contact Dr. Ponseti about the problems he was having with parents not

complying. The Orthotist told me today that the AFO maintains the

correction better. What a crock of @#%$!!!! I started to tell him about

how the FAB allows the calf muscle to develop and he says *they have plenty

of time to develop that muscle later* ohhhh!! I'm just so angry I could

spit!!!

So what do I do now? Well, my first thought is that I'm going to bombard

him with information starting with the tips post and I asked him to present

that information to new parents. I informed him that the orthotists don't

know these things, we talked about getting the heel down. He actually is

quite open to getting my emails, and I finally got him to give me his email

addy (something he said one time about them not being allowed to give email

addy's out - no communication between patients or something - BS!)

I need help though. I have lost most of my emails up till about 2 months

ago due to hard drive failure and having to give back the other laptop to

dh's former company. I have NOTHING saved anymore - none of the stuff from

with studies. None of the Ponseti emails people have sent to the

list, nothing. And I NEED it all. If anyone can help me please send me

anything that can be of use. I need information about AFO's, information

about DBB/FAB application/ brace, information about studies and

information about uncorrected feet. I need it all. If you have it saved

because you thought it was interesting PLEASE just fwd it to me. ,

I'll need your help the most with the studies. I would love for you to

send me your paper. If anyone has transcripts from symposia or other

conferences please send that to me too. I don't care what it is, if it

seems like it might help keep this method alive in Portland I want it.

TIA to all who can help. I can't tell you how much this makes me

crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti... but I

won't as of yet. I think I will try to make a difference in another

way. But if I have to I will. Seattle and Dr. Mosca are not that far

away... and if he has to refer people to Seattle rather than Portland than

so be it. I guess it's time for me to make a difference here, in the way

of a physical support group or something... I don't know what I'll have to

do but I know I must do something. AFO's... Jeez!!!

Kori

Mama of

Kenton 6/98

Merek 3/00

Darbi 3/03 - Rt. CF - DBB 12hr/day

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

_________________________________________________________________

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Kori,

I agree with previous posts that suggested you let Dr. Ponseti know about

the deviations. As I mentioned before, he has a form letter of sorts that he

sends to doctors. He says something to the effect that " I have learned from

a parent that you are deviating from the method by using AFOs although they

are not effective at holding the correction " . Something like that. Whatever

the deviations are.

I " told " on our second doctor and Dr. Ponseti sent her a letter. That was

way more effective than me trying to tell her she was doing it wrong. I did

email her to let her know I was switching doctors, and she never responded

to find out why or anything. Switching to a different doctor is another

effective way of " sending a message " . I agree that when I have an issue with

someone, I would like to discuss it, but the doctor patient relationship is

just not on an equal footing, much like most parent child relationships. I

remember telling my sister not to do something I knew she shouldn't be doing

and she would ignore me. Then again, she'd ignore my parents, too, until

they smacked her!

Anyway, just my 2 cents. For your own peace of mind, you could try to talk

directly with the doctor and see how that goes, even mention that you will

be letting Dr. P. know about his deviations, but I would still plan to let

Dr. P. know. He thanked me very much for letting him know.

Good luck! Joanne W.

frogabog frogabog@...> wrote:

I'm about as freaked out as I can get right now. I don't know if y'all

remember me being concerned about the application of Ponseti Method in

Portland last time I talked to our orthotist. Well, today I took Darbi

there to get measured for new shoes and talked to him again. It seems that

Dr. Sussman is not applying the method properly in more ways than bracing

times now. Apparently because parents aren't able to comply with the

DBB/FAB (babies are distressed!) he's now using AFO's and doing the

tenotomy standardly on all babies. While I don't think the tenotomy thing

is as horrible as it sounds, I KNOW my daughter did not need one and if

she'd been given one standardly she would have had an unnecessary

surgery. I'm just NOT happy about this. Dr. Sussman is listed on Dr.

Ponseti's website as certified. Dr. Ponseti referred me to him when Darbi

was born. I feel he should know about this... I am very angry that I am

the ONLY parent in Portland who knows the first thing about the Ponseti

Method (that I know of) and all these babies are being treated with AFO's

now instead of the FAB. Apparently not all, he told me (the orthotist)

that he fitted a baby just yesterday with the FAB... so it's not a lost

cause but unless something changes... the Ponseti Method will not be

available at Portland Shriners in the future.

This is actually my fault. Well, in a way it's not because I could never

get the orthotist to give me his email addy till today but I didn't push it

either. I should have sent him the information about properly applying the

FAB long ago. I should have sent the information about the brace

long ago. I should have PUSHED Dr. Sussman to review the information and

to contact Dr. Ponseti about the problems he was having with parents not

complying. The Orthotist told me today that the AFO maintains the

correction better. What a crock of @#%$!!!! I started to tell him about

how the FAB allows the calf muscle to develop and he says *they have plenty

of time to develop that muscle later* ohhhh!! I'm just so angry I could

spit!!!

So what do I do now? Well, my first thought is that I'm going to bombard

him with information starting with the tips post and I asked him to present

that information to new parents. I informed him that the orthotists don't

know these things, we talked about getting the heel down. He actually is

quite open to getting my emails, and I finally got him to give me his email

addy (something he said one time about them not being allowed to give email

addy's out - no communication between patients or something - BS!)

I need help though. I have lost most of my emails up till about 2 months

ago due to hard drive failure and having to give back the other laptop to

dh's former company. I have NOTHING saved anymore - none of the stuff from

with studies. None of the Ponseti emails people have sent to the

list, nothing. And I NEED it all. If anyone can help me please send me

anything that can be of use. I need information about AFO's, information

about DBB/FAB application/ brace, information about studies and

information about uncorrected feet. I need it all. If you have it saved

because you thought it was interesting PLEASE just fwd it to me. ,

I'll need your help the most with the studies. I would love for you to

send me your paper. If anyone has transcripts from symposia or other

conferences please send that to me too. I don't care what it is, if it

seems like it might help keep this method alive in Portland I want it.

TIA to all who can help. I can't tell you how much this makes me

crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti... but I

won't as of yet. I think I will try to make a difference in another

way. But if I have to I will. Seattle and Dr. Mosca are not that far

away... and if he has to refer people to Seattle rather than Portland than

so be it. I guess it's time for me to make a difference here, in the way

of a physical support group or something... I don't know what I'll have to

do but I know I must do something. AFO's... Jeez!!!

Kori

Mama of

Kenton 6/98

Merek 3/00

Darbi 3/03 - Rt. CF - DBB 12hr/day

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

_________________________________________________________________

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Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

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Kori,

All I will say is UUUGGGHHHHH!!!!!

Marilouise

9/9/03, LCF, 3 week cast after 2nd tenotomy (2 days left!!)

Owen and 3/20/99

> I'm about as freaked out as I can get right now. I don't know if

y'all

> remember me being concerned about the application of Ponseti

Method in

> Portland last time I talked to our orthotist. Well, today I took

Darbi

> there to get measured for new shoes and talked to him again. It

seems that

> Dr. Sussman is not applying the method properly in more ways than

bracing

> times now. Apparently because parents aren't able to comply with

the

> DBB/FAB (babies are distressed!) he's now using AFO's and doing

the

> tenotomy standardly on all babies. While I don't think the

tenotomy thing

> is as horrible as it sounds, I KNOW my daughter did not need one

and if

> she'd been given one standardly she would have had an unnecessary

> surgery. I'm just NOT happy about this. Dr. Sussman is listed on

Dr.

> Ponseti's website as certified. Dr. Ponseti referred me to him

when Darbi

> was born. I feel he should know about this... I am very angry

that I am

> the ONLY parent in Portland who knows the first thing about the

Ponseti

> Method (that I know of) and all these babies are being treated

with AFO's

> now instead of the FAB. Apparently not all, he told me (the

orthotist)

> that he fitted a baby just yesterday with the FAB... so it's not

a lost

> cause but unless something changes... the Ponseti Method will not

be

> available at Portland Shriners in the future.

>

> This is actually my fault. Well, in a way it's not because I

could never

> get the orthotist to give me his email addy till today but I

didn't push it

> either. I should have sent him the information about properly

applying the

> FAB long ago. I should have sent the information about the

brace

> long ago. I should have PUSHED Dr. Sussman to review the

information and

> to contact Dr. Ponseti about the problems he was having with

parents not

> complying. The Orthotist told me today that the AFO maintains the

> correction better. What a crock of @#%$!!!! I started to tell

him about

> how the FAB allows the calf muscle to develop and he says *they

have plenty

> of time to develop that muscle later* ohhhh!! I'm just so angry

I could

> spit!!!

>

> So what do I do now? Well, my first thought is that I'm going to

bombard

> him with information starting with the tips post and I asked him

to present

> that information to new parents. I informed him that the

orthotists don't

> know these things, we talked about getting the heel down. He

actually is

> quite open to getting my emails, and I finally got him to give me

his email

> addy (something he said one time about them not being allowed to

give email

> addy's out - no communication between patients or something - BS!)

>

> I need help though. I have lost most of my emails up till about 2

months

> ago due to hard drive failure and having to give back the other

laptop to

> dh's former company. I have NOTHING saved anymore - none of the

stuff from

> with studies. None of the Ponseti emails people have sent

to the

> list, nothing. And I NEED it all. If anyone can help me please

send me

> anything that can be of use. I need information about AFO's,

information

> about DBB/FAB application/ brace, information about

studies and

> information about uncorrected feet. I need it all. If you have

it saved

> because you thought it was interesting PLEASE just fwd it to me.

,

> I'll need your help the most with the studies. I would love for

you to

> send me your paper. If anyone has transcripts from symposia or

other

> conferences please send that to me too. I don't care what it is,

if it

> seems like it might help keep this method alive in Portland I want

it.

>

> TIA to all who can help. I can't tell you how much this makes me

> crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti...

but I

> won't as of yet. I think I will try to make a difference in

another

> way. But if I have to I will. Seattle and Dr. Mosca are not that

far

> away... and if he has to refer people to Seattle rather than

Portland than

> so be it. I guess it's time for me to make a difference here, in

the way

> of a physical support group or something... I don't know what

I'll have to

> do but I know I must do something. AFO's... Jeez!!!

>

> Kori

> Mama of

> Kenton 6/98

> Merek 3/00

> Darbi 3/03 - Rt. CF - DBB 12hr/day

> (¨`·.·´¨)

> `·.¸(¨`·.·´¨)

> `·.¸.·´

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Kori,

DON'T GIVE UP!!!!!

I was in the NICU today (my second home) & was talking to a nurse regarding

Aidan's clubfeet. She said her son had clubfeet, he's 7 years old today. She

hadn't heard of the Ponseti method. When I told her it was non-surgical she

said he won't get correction w/out surgery. I told her it's been proven. She

was told her son's feet needed surgery, he's had 3 on each so far and she said

his feet always bother him, she has to massage them every night. HE'S ONLY 7,

and he's already in pain from surgery's done several years ago. I started to

tell her about Dr. Ponseti but stopped. There is nothing she can do now, the

damage has been done.

I almost started to cry for her and her son. The only way to relieve children's

future suffering is word of mouth from parents who have lived through it.. I'd

take another parent's word, regarding the validity of a doctor, before I'd take

his word. Tell Dr P & take yourself & daughter to Seattle.

We have found a doctor here who says he's been doing the " Ponseti Method "

exclusively for the last 3 years. You better believe I'm going to question him

every step of the way. I'm also going to ask for references.

HANG IN THERE. My heart & prayers go out to you and Darbi.

WOW, that doctor picked the wrong parent to screw with!! :-)

& Aidan (blcf 8/5)

Number23 number23@...> wrote:

Oh I'd be angry too! But I do think Dr. Ponseti needs to know this before he

refers other people to a " certified " doctor who is no longer practicing a

certified method!

s.

Distressing news from Portland Shriners

I'm about as freaked out as I can get right now. I don't know if y'all

remember me being concerned about the application of Ponseti Method in

Portland last time I talked to our orthotist. Well, today I took Darbi

there to get measured for new shoes and talked to him again. It seems that

Dr. Sussman is not applying the method properly in more ways than bracing

times now. Apparently because parents aren't able to comply with the

DBB/FAB (babies are distressed!) he's now using AFO's and doing the

tenotomy standardly on all babies. While I don't think the tenotomy thing

is as horrible as it sounds, I KNOW my daughter did not need one and if

she'd been given one standardly she would have had an unnecessary

surgery. I'm just NOT happy about this. Dr. Sussman is listed on Dr.

Ponseti's website as certified. Dr. Ponseti referred me to him when Darbi

was born. I feel he should know about this... I am very angry that I am

the ONLY parent in Portland who knows the first thing about the Ponseti

Method (that I know of) and all these babies are being treated with AFO's

now instead of the FAB. Apparently not all, he told me (the orthotist)

that he fitted a baby just yesterday with the FAB... so it's not a lost

cause but unless something changes... the Ponseti Method will not be

available at Portland Shriners in the future.

This is actually my fault. Well, in a way it's not because I could never

get the orthotist to give me his email addy till today but I didn't push it

either. I should have sent him the information about properly applying the

FAB long ago. I should have sent the information about the brace

long ago. I should have PUSHED Dr. Sussman to review the information and

to contact Dr. Ponseti about the problems he was having with parents not

complying. The Orthotist told me today that the AFO maintains the

correction better. What a crock of @#%$!!!! I started to tell him about

how the FAB allows the calf muscle to develop and he says *they have plenty

of time to develop that muscle later* ohhhh!! I'm just so angry I could

spit!!!

So what do I do now? Well, my first thought is that I'm going to bombard

him with information starting with the tips post and I asked him to present

that information to new parents. I informed him that the orthotists don't

know these things, we talked about getting the heel down. He actually is

quite open to getting my emails, and I finally got him to give me his email

addy (something he said one time about them not being allowed to give email

addy's out - no communication between patients or something - BS!)

I need help though. I have lost most of my emails up till about 2 months

ago due to hard drive failure and having to give back the other laptop to

dh's former company. I have NOTHING saved anymore - none of the stuff from

with studies. None of the Ponseti emails people have sent to the

list, nothing. And I NEED it all. If anyone can help me please send me

anything that can be of use. I need information about AFO's, information

about DBB/FAB application/ brace, information about studies and

information about uncorrected feet. I need it all. If you have it saved

because you thought it was interesting PLEASE just fwd it to me. ,

I'll need your help the most with the studies. I would love for you to

send me your paper. If anyone has transcripts from symposia or other

conferences please send that to me too. I don't care what it is, if it

seems like it might help keep this method alive in Portland I want it.

TIA to all who can help. I can't tell you how much this makes me

crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti... but I

won't as of yet. I think I will try to make a difference in another

way. But if I have to I will. Seattle and Dr. Mosca are not that far

away... and if he has to refer people to Seattle rather than Portland than

so be it. I guess it's time for me to make a difference here, in the way

of a physical support group or something... I don't know what I'll have to

do but I know I must do something. AFO's... Jeez!!!

Kori

Mama of

Kenton 6/98

Merek 3/00

Darbi 3/03 - Rt. CF - DBB 12hr/day

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

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Posted
Posted

I must have read this post 3 times and each time I get a little more

aggravated! Some doctors are UNBELIEVABLE!!

Mommy to 12/17/98

and Christian 1/30/04

_____

From: frogabog

Sent: Friday, September 10, 2004 1:41 PM

To: nosurgery4clubfoot

Subject: Distressing news from Portland Shriners

I'm about as freaked out as I can get right now. I don't know if y'all

remember me being concerned about the application of Ponseti Method in

Portland last time I talked to our orthotist. Well, today I took Darbi

there to get measured for new shoes and talked to him again. It seems that

Dr. Sussman is not applying the method properly in more ways than bracing

times now. Apparently because parents aren't able to comply with the

DBB/FAB (babies are distressed!) he's now using AFO's and doing the

tenotomy standardly on all babies. While I don't think the tenotomy thing

is as horrible as it sounds, I KNOW my daughter did not need one and if

she'd been given one standardly she would have had an unnecessary

surgery. I'm just NOT happy about this. Dr. Sussman is listed on Dr.

Ponseti's website as certified. Dr. Ponseti referred me to him when Darbi

was born. I feel he should know about this... I am very angry that I am

the ONLY parent in Portland who knows the first thing about the Ponseti

Method (that I know of) and all these babies are being treated with AFO's

now instead of the FAB. Apparently not all, he told me (the orthotist)

that he fitted a baby just yesterday with the FAB... so it's not a lost

cause but unless something changes... the Ponseti Method will not be

available at Portland Shriners in the future.

This is actually my fault. Well, in a way it's not because I could never

get the orthotist to give me his email addy till today but I didn't push it

either. I should have sent him the information about properly applying the

FAB long ago. I should have sent the information about the brace

long ago. I should have PUSHED Dr. Sussman to review the information and

to contact Dr. Ponseti about the problems he was having with parents not

complying. The Orthotist told me today that the AFO maintains the

correction better. What a crock of @#%$!!!! I started to tell him about

how the FAB allows the calf muscle to develop and he says *they have plenty

of time to develop that muscle later* ohhhh!! I'm just so angry I could

spit!!!

So what do I do now? Well, my first thought is that I'm going to bombard

him with information starting with the tips post and I asked him to present

that information to new parents. I informed him that the orthotists don't

know these things, we talked about getting the heel down. He actually is

quite open to getting my emails, and I finally got him to give me his email

addy (something he said one time about them not being allowed to give email

addy's out - no communication between patients or something - BS!)

I need help though. I have lost most of my emails up till about 2 months

ago due to hard drive failure and having to give back the other laptop to

dh's former company. I have NOTHING saved anymore - none of the stuff from

with studies. None of the Ponseti emails people have sent to the

list, nothing. And I NEED it all. If anyone can help me please send me

anything that can be of use. I need information about AFO's, information

about DBB/FAB application/ brace, information about studies and

information about uncorrected feet. I need it all. If you have it saved

because you thought it was interesting PLEASE just fwd it to me. ,

I'll need your help the most with the studies. I would love for you to

send me your paper. If anyone has transcripts from symposia or other

conferences please send that to me too. I don't care what it is, if it

seems like it might help keep this method alive in Portland I want it.

TIA to all who can help. I can't tell you how much this makes me

crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti... but I

won't as of yet. I think I will try to make a difference in another

way. But if I have to I will. Seattle and Dr. Mosca are not that far

away... and if he has to refer people to Seattle rather than Portland than

so be it. I guess it's time for me to make a difference here, in the way

of a physical support group or something... I don't know what I'll have to

do but I know I must do something. AFO's... Jeez!!!

Kori

Mama of

Kenton 6/98

Merek 3/00

Darbi 3/03 - Rt. CF - DBB 12hr/day

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

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Posted
Posted

I must have read this post 3 times and each time I get a little more

aggravated! Some doctors are UNBELIEVABLE!!

Mommy to 12/17/98

and Christian 1/30/04

_____

From: frogabog

Sent: Friday, September 10, 2004 1:41 PM

To: nosurgery4clubfoot

Subject: Distressing news from Portland Shriners

I'm about as freaked out as I can get right now. I don't know if y'all

remember me being concerned about the application of Ponseti Method in

Portland last time I talked to our orthotist. Well, today I took Darbi

there to get measured for new shoes and talked to him again. It seems that

Dr. Sussman is not applying the method properly in more ways than bracing

times now. Apparently because parents aren't able to comply with the

DBB/FAB (babies are distressed!) he's now using AFO's and doing the

tenotomy standardly on all babies. While I don't think the tenotomy thing

is as horrible as it sounds, I KNOW my daughter did not need one and if

she'd been given one standardly she would have had an unnecessary

surgery. I'm just NOT happy about this. Dr. Sussman is listed on Dr.

Ponseti's website as certified. Dr. Ponseti referred me to him when Darbi

was born. I feel he should know about this... I am very angry that I am

the ONLY parent in Portland who knows the first thing about the Ponseti

Method (that I know of) and all these babies are being treated with AFO's

now instead of the FAB. Apparently not all, he told me (the orthotist)

that he fitted a baby just yesterday with the FAB... so it's not a lost

cause but unless something changes... the Ponseti Method will not be

available at Portland Shriners in the future.

This is actually my fault. Well, in a way it's not because I could never

get the orthotist to give me his email addy till today but I didn't push it

either. I should have sent him the information about properly applying the

FAB long ago. I should have sent the information about the brace

long ago. I should have PUSHED Dr. Sussman to review the information and

to contact Dr. Ponseti about the problems he was having with parents not

complying. The Orthotist told me today that the AFO maintains the

correction better. What a crock of @#%$!!!! I started to tell him about

how the FAB allows the calf muscle to develop and he says *they have plenty

of time to develop that muscle later* ohhhh!! I'm just so angry I could

spit!!!

So what do I do now? Well, my first thought is that I'm going to bombard

him with information starting with the tips post and I asked him to present

that information to new parents. I informed him that the orthotists don't

know these things, we talked about getting the heel down. He actually is

quite open to getting my emails, and I finally got him to give me his email

addy (something he said one time about them not being allowed to give email

addy's out - no communication between patients or something - BS!)

I need help though. I have lost most of my emails up till about 2 months

ago due to hard drive failure and having to give back the other laptop to

dh's former company. I have NOTHING saved anymore - none of the stuff from

with studies. None of the Ponseti emails people have sent to the

list, nothing. And I NEED it all. If anyone can help me please send me

anything that can be of use. I need information about AFO's, information

about DBB/FAB application/ brace, information about studies and

information about uncorrected feet. I need it all. If you have it saved

because you thought it was interesting PLEASE just fwd it to me. ,

I'll need your help the most with the studies. I would love for you to

send me your paper. If anyone has transcripts from symposia or other

conferences please send that to me too. I don't care what it is, if it

seems like it might help keep this method alive in Portland I want it.

TIA to all who can help. I can't tell you how much this makes me

crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti... but I

won't as of yet. I think I will try to make a difference in another

way. But if I have to I will. Seattle and Dr. Mosca are not that far

away... and if he has to refer people to Seattle rather than Portland than

so be it. I guess it's time for me to make a difference here, in the way

of a physical support group or something... I don't know what I'll have to

do but I know I must do something. AFO's... Jeez!!!

Kori

Mama of

Kenton 6/98

Merek 3/00

Darbi 3/03 - Rt. CF - DBB 12hr/day

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

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Posted
Posted

I must have read this post 3 times and each time I get a little more

aggravated! Some doctors are UNBELIEVABLE!!

Mommy to 12/17/98

and Christian 1/30/04

_____

From: frogabog

Sent: Friday, September 10, 2004 1:41 PM

To: nosurgery4clubfoot

Subject: Distressing news from Portland Shriners

I'm about as freaked out as I can get right now. I don't know if y'all

remember me being concerned about the application of Ponseti Method in

Portland last time I talked to our orthotist. Well, today I took Darbi

there to get measured for new shoes and talked to him again. It seems that

Dr. Sussman is not applying the method properly in more ways than bracing

times now. Apparently because parents aren't able to comply with the

DBB/FAB (babies are distressed!) he's now using AFO's and doing the

tenotomy standardly on all babies. While I don't think the tenotomy thing

is as horrible as it sounds, I KNOW my daughter did not need one and if

she'd been given one standardly she would have had an unnecessary

surgery. I'm just NOT happy about this. Dr. Sussman is listed on Dr.

Ponseti's website as certified. Dr. Ponseti referred me to him when Darbi

was born. I feel he should know about this... I am very angry that I am

the ONLY parent in Portland who knows the first thing about the Ponseti

Method (that I know of) and all these babies are being treated with AFO's

now instead of the FAB. Apparently not all, he told me (the orthotist)

that he fitted a baby just yesterday with the FAB... so it's not a lost

cause but unless something changes... the Ponseti Method will not be

available at Portland Shriners in the future.

This is actually my fault. Well, in a way it's not because I could never

get the orthotist to give me his email addy till today but I didn't push it

either. I should have sent him the information about properly applying the

FAB long ago. I should have sent the information about the brace

long ago. I should have PUSHED Dr. Sussman to review the information and

to contact Dr. Ponseti about the problems he was having with parents not

complying. The Orthotist told me today that the AFO maintains the

correction better. What a crock of @#%$!!!! I started to tell him about

how the FAB allows the calf muscle to develop and he says *they have plenty

of time to develop that muscle later* ohhhh!! I'm just so angry I could

spit!!!

So what do I do now? Well, my first thought is that I'm going to bombard

him with information starting with the tips post and I asked him to present

that information to new parents. I informed him that the orthotists don't

know these things, we talked about getting the heel down. He actually is

quite open to getting my emails, and I finally got him to give me his email

addy (something he said one time about them not being allowed to give email

addy's out - no communication between patients or something - BS!)

I need help though. I have lost most of my emails up till about 2 months

ago due to hard drive failure and having to give back the other laptop to

dh's former company. I have NOTHING saved anymore - none of the stuff from

with studies. None of the Ponseti emails people have sent to the

list, nothing. And I NEED it all. If anyone can help me please send me

anything that can be of use. I need information about AFO's, information

about DBB/FAB application/ brace, information about studies and

information about uncorrected feet. I need it all. If you have it saved

because you thought it was interesting PLEASE just fwd it to me. ,

I'll need your help the most with the studies. I would love for you to

send me your paper. If anyone has transcripts from symposia or other

conferences please send that to me too. I don't care what it is, if it

seems like it might help keep this method alive in Portland I want it.

TIA to all who can help. I can't tell you how much this makes me

crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti... but I

won't as of yet. I think I will try to make a difference in another

way. But if I have to I will. Seattle and Dr. Mosca are not that far

away... and if he has to refer people to Seattle rather than Portland than

so be it. I guess it's time for me to make a difference here, in the way

of a physical support group or something... I don't know what I'll have to

do but I know I must do something. AFO's... Jeez!!!

Kori

Mama of

Kenton 6/98

Merek 3/00

Darbi 3/03 - Rt. CF - DBB 12hr/day

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

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Posted
Posted

Kori,

I don't understand what is so bad about AFO's? They seem so much

better to me than the DBB. It sounds so horrible, I think the AFO is

much nicer to the baby. I would like to know what the advantages are

of the DBB over the AFO. I don't want to be doing somthing that will

damage my baby's chance of a full recovery, but I don't want her to

suffer unesicarily,

Leah

Sophia 08/05/04 bilateral clubfoot now in AFO's after 4 weeks of

serial casting.

> > I'm about as freaked out as I can get right now. I don't know if

> y'all

> > remember me being concerned about the application of Ponseti

> Method in

> > Portland last time I talked to our orthotist. Well, today I took

> Darbi

> > there to get measured for new shoes and talked to him again. It

> seems that

> > Dr. Sussman is not applying the method properly in more ways than

> bracing

> > times now. Apparently because parents aren't able to comply with

> the

> > DBB/FAB (babies are distressed!) he's now using AFO's and doing

> the

> > tenotomy standardly on all babies. While I don't think the

> tenotomy thing

> > is as horrible as it sounds, I KNOW my daughter did not need one

> and if

> > she'd been given one standardly she would have had an unnecessary

> > surgery. I'm just NOT happy about this. Dr. Sussman is listed on

> Dr.

> > Ponseti's website as certified. Dr. Ponseti referred me to him

> when Darbi

> > was born. I feel he should know about this... I am very angry

> that I am

> > the ONLY parent in Portland who knows the first thing about the

> Ponseti

> > Method (that I know of) and all these babies are being treated

> with AFO's

> > now instead of the FAB. Apparently not all, he told me (the

> orthotist)

> > that he fitted a baby just yesterday with the FAB... so it's not

> a lost

> > cause but unless something changes... the Ponseti Method will not

> be

> > available at Portland Shriners in the future.

> >

> > This is actually my fault. Well, in a way it's not because I

> could never

> > get the orthotist to give me his email addy till today but I

> didn't push it

> > either. I should have sent him the information about properly

> applying the

> > FAB long ago. I should have sent the information about the

> brace

> > long ago. I should have PUSHED Dr. Sussman to review the

> information and

> > to contact Dr. Ponseti about the problems he was having with

> parents not

> > complying. The Orthotist told me today that the AFO maintains the

> > correction better. What a crock of @#%$!!!! I started to tell

> him about

> > how the FAB allows the calf muscle to develop and he says *they

> have plenty

> > of time to develop that muscle later* ohhhh!! I'm just so angry

> I could

> > spit!!!

> >

> > So what do I do now? Well, my first thought is that I'm going to

> bombard

> > him with information starting with the tips post and I asked him

> to present

> > that information to new parents. I informed him that the

> orthotists don't

> > know these things, we talked about getting the heel down. He

> actually is

> > quite open to getting my emails, and I finally got him to give me

> his email

> > addy (something he said one time about them not being allowed to

> give email

> > addy's out - no communication between patients or something - BS!)

> >

> > I need help though. I have lost most of my emails up till about 2

> months

> > ago due to hard drive failure and having to give back the other

> laptop to

> > dh's former company. I have NOTHING saved anymore - none of the

> stuff from

> > with studies. None of the Ponseti emails people have sent

> to the

> > list, nothing. And I NEED it all. If anyone can help me please

> send me

> > anything that can be of use. I need information about AFO's,

> information

> > about DBB/FAB application/ brace, information about

> studies and

> > information about uncorrected feet. I need it all. If you have

> it saved

> > because you thought it was interesting PLEASE just fwd it to me.

> ,

> > I'll need your help the most with the studies. I would love for

> you to

> > send me your paper. If anyone has transcripts from symposia or

> other

> > conferences please send that to me too. I don't care what it is,

> if it

> > seems like it might help keep this method alive in Portland I want

> it.

> >

> > TIA to all who can help. I can't tell you how much this makes me

> > crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti...

> but I

> > won't as of yet. I think I will try to make a difference in

> another

> > way. But if I have to I will. Seattle and Dr. Mosca are not that

> far

> > away... and if he has to refer people to Seattle rather than

> Portland than

> > so be it. I guess it's time for me to make a difference here, in

> the way

> > of a physical support group or something... I don't know what

> I'll have to

> > do but I know I must do something. AFO's... Jeez!!!

> >

> > Kori

> > Mama of

> > Kenton 6/98

> > Merek 3/00

> > Darbi 3/03 - Rt. CF - DBB 12hr/day

> > (¨`·.·´¨)

> > `·.¸(¨`·.·´¨)

> > `·.¸.·´

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Posted
Posted

Kori,

I don't understand what is so bad about AFO's? They seem so much

better to me than the DBB. It sounds so horrible, I think the AFO is

much nicer to the baby. I would like to know what the advantages are

of the DBB over the AFO. I don't want to be doing somthing that will

damage my baby's chance of a full recovery, but I don't want her to

suffer unesicarily,

Leah

Sophia 08/05/04 bilateral clubfoot now in AFO's after 4 weeks of

serial casting.

> > I'm about as freaked out as I can get right now. I don't know if

> y'all

> > remember me being concerned about the application of Ponseti

> Method in

> > Portland last time I talked to our orthotist. Well, today I took

> Darbi

> > there to get measured for new shoes and talked to him again. It

> seems that

> > Dr. Sussman is not applying the method properly in more ways than

> bracing

> > times now. Apparently because parents aren't able to comply with

> the

> > DBB/FAB (babies are distressed!) he's now using AFO's and doing

> the

> > tenotomy standardly on all babies. While I don't think the

> tenotomy thing

> > is as horrible as it sounds, I KNOW my daughter did not need one

> and if

> > she'd been given one standardly she would have had an unnecessary

> > surgery. I'm just NOT happy about this. Dr. Sussman is listed on

> Dr.

> > Ponseti's website as certified. Dr. Ponseti referred me to him

> when Darbi

> > was born. I feel he should know about this... I am very angry

> that I am

> > the ONLY parent in Portland who knows the first thing about the

> Ponseti

> > Method (that I know of) and all these babies are being treated

> with AFO's

> > now instead of the FAB. Apparently not all, he told me (the

> orthotist)

> > that he fitted a baby just yesterday with the FAB... so it's not

> a lost

> > cause but unless something changes... the Ponseti Method will not

> be

> > available at Portland Shriners in the future.

> >

> > This is actually my fault. Well, in a way it's not because I

> could never

> > get the orthotist to give me his email addy till today but I

> didn't push it

> > either. I should have sent him the information about properly

> applying the

> > FAB long ago. I should have sent the information about the

> brace

> > long ago. I should have PUSHED Dr. Sussman to review the

> information and

> > to contact Dr. Ponseti about the problems he was having with

> parents not

> > complying. The Orthotist told me today that the AFO maintains the

> > correction better. What a crock of @#%$!!!! I started to tell

> him about

> > how the FAB allows the calf muscle to develop and he says *they

> have plenty

> > of time to develop that muscle later* ohhhh!! I'm just so angry

> I could

> > spit!!!

> >

> > So what do I do now? Well, my first thought is that I'm going to

> bombard

> > him with information starting with the tips post and I asked him

> to present

> > that information to new parents. I informed him that the

> orthotists don't

> > know these things, we talked about getting the heel down. He

> actually is

> > quite open to getting my emails, and I finally got him to give me

> his email

> > addy (something he said one time about them not being allowed to

> give email

> > addy's out - no communication between patients or something - BS!)

> >

> > I need help though. I have lost most of my emails up till about 2

> months

> > ago due to hard drive failure and having to give back the other

> laptop to

> > dh's former company. I have NOTHING saved anymore - none of the

> stuff from

> > with studies. None of the Ponseti emails people have sent

> to the

> > list, nothing. And I NEED it all. If anyone can help me please

> send me

> > anything that can be of use. I need information about AFO's,

> information

> > about DBB/FAB application/ brace, information about

> studies and

> > information about uncorrected feet. I need it all. If you have

> it saved

> > because you thought it was interesting PLEASE just fwd it to me.

> ,

> > I'll need your help the most with the studies. I would love for

> you to

> > send me your paper. If anyone has transcripts from symposia or

> other

> > conferences please send that to me too. I don't care what it is,

> if it

> > seems like it might help keep this method alive in Portland I want

> it.

> >

> > TIA to all who can help. I can't tell you how much this makes me

> > crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti...

> but I

> > won't as of yet. I think I will try to make a difference in

> another

> > way. But if I have to I will. Seattle and Dr. Mosca are not that

> far

> > away... and if he has to refer people to Seattle rather than

> Portland than

> > so be it. I guess it's time for me to make a difference here, in

> the way

> > of a physical support group or something... I don't know what

> I'll have to

> > do but I know I must do something. AFO's... Jeez!!!

> >

> > Kori

> > Mama of

> > Kenton 6/98

> > Merek 3/00

> > Darbi 3/03 - Rt. CF - DBB 12hr/day

> > (¨`·.·´¨)

> > `·.¸(¨`·.·´¨)

> > `·.¸.·´

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Posted
Posted

Kori,

I don't understand what is so bad about AFO's? They seem so much

better to me than the DBB. It sounds so horrible, I think the AFO is

much nicer to the baby. I would like to know what the advantages are

of the DBB over the AFO. I don't want to be doing somthing that will

damage my baby's chance of a full recovery, but I don't want her to

suffer unesicarily,

Leah

Sophia 08/05/04 bilateral clubfoot now in AFO's after 4 weeks of

serial casting.

> > I'm about as freaked out as I can get right now. I don't know if

> y'all

> > remember me being concerned about the application of Ponseti

> Method in

> > Portland last time I talked to our orthotist. Well, today I took

> Darbi

> > there to get measured for new shoes and talked to him again. It

> seems that

> > Dr. Sussman is not applying the method properly in more ways than

> bracing

> > times now. Apparently because parents aren't able to comply with

> the

> > DBB/FAB (babies are distressed!) he's now using AFO's and doing

> the

> > tenotomy standardly on all babies. While I don't think the

> tenotomy thing

> > is as horrible as it sounds, I KNOW my daughter did not need one

> and if

> > she'd been given one standardly she would have had an unnecessary

> > surgery. I'm just NOT happy about this. Dr. Sussman is listed on

> Dr.

> > Ponseti's website as certified. Dr. Ponseti referred me to him

> when Darbi

> > was born. I feel he should know about this... I am very angry

> that I am

> > the ONLY parent in Portland who knows the first thing about the

> Ponseti

> > Method (that I know of) and all these babies are being treated

> with AFO's

> > now instead of the FAB. Apparently not all, he told me (the

> orthotist)

> > that he fitted a baby just yesterday with the FAB... so it's not

> a lost

> > cause but unless something changes... the Ponseti Method will not

> be

> > available at Portland Shriners in the future.

> >

> > This is actually my fault. Well, in a way it's not because I

> could never

> > get the orthotist to give me his email addy till today but I

> didn't push it

> > either. I should have sent him the information about properly

> applying the

> > FAB long ago. I should have sent the information about the

> brace

> > long ago. I should have PUSHED Dr. Sussman to review the

> information and

> > to contact Dr. Ponseti about the problems he was having with

> parents not

> > complying. The Orthotist told me today that the AFO maintains the

> > correction better. What a crock of @#%$!!!! I started to tell

> him about

> > how the FAB allows the calf muscle to develop and he says *they

> have plenty

> > of time to develop that muscle later* ohhhh!! I'm just so angry

> I could

> > spit!!!

> >

> > So what do I do now? Well, my first thought is that I'm going to

> bombard

> > him with information starting with the tips post and I asked him

> to present

> > that information to new parents. I informed him that the

> orthotists don't

> > know these things, we talked about getting the heel down. He

> actually is

> > quite open to getting my emails, and I finally got him to give me

> his email

> > addy (something he said one time about them not being allowed to

> give email

> > addy's out - no communication between patients or something - BS!)

> >

> > I need help though. I have lost most of my emails up till about 2

> months

> > ago due to hard drive failure and having to give back the other

> laptop to

> > dh's former company. I have NOTHING saved anymore - none of the

> stuff from

> > with studies. None of the Ponseti emails people have sent

> to the

> > list, nothing. And I NEED it all. If anyone can help me please

> send me

> > anything that can be of use. I need information about AFO's,

> information

> > about DBB/FAB application/ brace, information about

> studies and

> > information about uncorrected feet. I need it all. If you have

> it saved

> > because you thought it was interesting PLEASE just fwd it to me.

> ,

> > I'll need your help the most with the studies. I would love for

> you to

> > send me your paper. If anyone has transcripts from symposia or

> other

> > conferences please send that to me too. I don't care what it is,

> if it

> > seems like it might help keep this method alive in Portland I want

> it.

> >

> > TIA to all who can help. I can't tell you how much this makes me

> > crazy... I just want to *tell on* Dr. Sussman to Dr. Ponseti...

> but I

> > won't as of yet. I think I will try to make a difference in

> another

> > way. But if I have to I will. Seattle and Dr. Mosca are not that

> far

> > away... and if he has to refer people to Seattle rather than

> Portland than

> > so be it. I guess it's time for me to make a difference here, in

> the way

> > of a physical support group or something... I don't know what

> I'll have to

> > do but I know I must do something. AFO's... Jeez!!!

> >

> > Kori

> > Mama of

> > Kenton 6/98

> > Merek 3/00

> > Darbi 3/03 - Rt. CF - DBB 12hr/day

> > (¨`·.·´¨)

> > `·.¸(¨`·.·´¨)

> > `·.¸.·´

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Posted

Exactly - with Dr. Ponseti's age we cannot afford to let bad apples spoil his

whole barrel of work when it's just starting to take off so well!

s.

Dr. Ponseti really needs to know. Not only would that prevent him from

sending people to get AFO's but this type of practice also aids the doctors who

say, " The Ponseti method doesn't work " People will be dangerously misled and

this could seriously damage the reputation of the method.

GO KORI!

Freeman

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